How Long You Can Get Hospice Care

It was always a question I had, how long can my Mom get hospice care. Everyone was rather vague, but there was a booklet left by the home health agency which details the requirement.

The booklet is from Centers for Medicare & Medicade Services. I have not found it on the internet. It can be ordered by calling 1 - 800- 633 -4227.

This is what is says

How Long You Can Get Hospice Care

You can get hospice care as long as your doctor and the hospice medical director or other hospice doctor continue to certify that you are terminally ill and probably have six months or less to live if the disease runs its normal course. If you live longer than six months, you can still get hospice care, as long as the hospice medical director or other hospice doctor recertifies that you are terminally ill.

Important: Hospice care is given in periods of care. You can get hospice care for two 90-day periods followed by an unlimited number of 60-day periods. At the start of each period of care, the hospice medical director or other hospice doctor must recertify that you are terminally ill, so you can continue to get hospice care. A period of care start the day you begin to get hospice care. It ends when your 90-day or 60-day period ends.

Another day of caregiving

Oh what a day.

The home health came today to give my mom her bath. We also had to change the sheets, including the comforter which I had put on top of the air mattress provided, which I think is too hard.

As we were turning her over when we changed the sheets, I noticed this blob thing on her back. It looked like a blob of gelatin. On closer inspection it was a water blister.

I was quite shocked, as I had not seen it earlier in the morning when I changed her. I didn't feel so bad when the home health aide said she didn't see it when she washed her back.

My only guess is, is just materialized in a few minutes.

My immediate reaction was to lance it, which I did, with a sterilized needle.

Then, we called the nurse, who said not to lance it (what to they know!)

Anyway, the deed was done. I put some antibiotic cream on it, and tonight I took a gauze pad and put Vaseline on it (so it would stick) and put some more antibiotic cream on the blister. By then the blister had gone down, so, in my opinion, I did the right thing by lancing it.

That's not the only problem I had today. As my mom's arm was once again swelling I gave her a diuretic. Well, as she was sitting sideways in bed to eat lunch, and was quite close to the edge of the bed, I noticed there was a wet spot on the carpet. And no, we did not spill any water, so you know what that meant.

I had to change her diaper, the turn sheet, and her shirt.

I guess I earned my keep today.

Just another day in paradise.

Advice from someone who has been there

This, from Dutiful Daughter

Feed her, it’s a sign that she’s not ready to die. Someday she will refuse to eat, and that will be your sign that she’s ready. My mom got to that stage, and Dad was bewildered when the Hospice nurse said that we were to stop giving her medications and even water. Even now I sometimes have to remind him that the timing was Mom’s, not the Hospice nurse’s. He’ll say, “I remember when Mary said to stop giving Mother her medications.” I’ll chime in and say, “Remember that she only did that after Mom stopped eating.”

On that day, our family and friends began to gather in Mom’s room. My daughter drove in from college a couple hours away and my brother who lives out of town flew in the next morning. Any family member within range arrived, and our closest friends, including several ministers, came for visits. After quite a few visitors all one day and most of the next, there came a moment in the late afternoon when only my dad and Mom’s three children were in her room. Dad said something like, “Well, we’re all here,” and held her hand. Within a few minutes her breathing changed, and I knew she was dying. She took her last breath about 10 minutes later. It was the most amazing experience of my life.

Mom had severe Alzheimer’s and had not had much control over her life for several years, especially the last two. At the moment of her death, it was as though she took control and triumphed by choosing her own time and situation. She went with her husband of 58 years and all her children surrounding her and loving her.

Sweet Dreams - NOT

The other night I had a dream my mother stood up, walked, and then got in the car and started driving.

I was sitting in the passenger seat. She wasn't putting on the brake, and was about to crash into a building. I reached over with my foot and pushed on the brake. We crashed into the building, but not very fast.

She asked me why I did that, and I said "because you were going to crash into that building!!".

Strange thing, the next day on the news, a report of a woman who crashed into a building. She said she mistakenly pushed on the gas pedal instead of the brake.

Weird.

I miss my mom

No, Mom didn't die.

It's just that I miss the mother she use to be, before her stroke.

The day before Mom had her stroke, she drove herself to water aerobics, drove to Wal-Mart, walked all around Wal-Mart trying to find a new swim suit, drove home.

The next day, her world changed, as did mine.

When I looked at the clutter in the laundry room last night, I said to myself "mom would have this better organized".

My mom was a great organizer. She was the kind who, upon returning from a trip, immediately got the pictures developed and into a scrapbook.

She was the original scapbooker, before it became popular. She kept all the receipts and ticket stubs from trips, which went into the scrapbook along with the pictures, all of which were properly labeled.

She didn't do any of that "fancy" stuff they do now in scrapbooks. Hers was always just a record of her trip.

She also often kept a diary when on the trip. I remember when my parents and I went to London, the year after my husband died. Every evening my mother would sit at the desk and write what we had done that day.

That's the mom I miss.

Mom is still here. However, she can no longer stand, or sit (without being propped up), or roll over. All she can do is move her right arm and right leg.

At least she can eat. She still has her own teeth.

Sometimes she even feeds herself.

That's on a good day.

I miss Mom.

Haircuts

My Mom got her hair cut yesterday.

This is the second time someone has come to her house to cut her hair.

I have found that quite a few hair stylists will go to homes, and especially with the recession, I presume they are looking for any business.

This woman cut my Mom's hair when she was in the nursing home, and I really liked they way she cut it.

My mom has naturally wavy hair, so if she has a good haircut it doesn't require much work to look decent.

Because my mom tends to scratch her head a lot, as the side effect to one of the medicines is "itchy scalp", we decided to go for a short cut. It's really cute, but boy is it short.

I also had her cut my hair - a great time saver for me.

This hair stylist only charges $12.00 for a cut, and of course I give her a nice tip.

Just when you think they are out of it...

My mom has been speaking very little the last couple of months. Sometimes the only words I hear her say all day are when I ask her if she wants sausage or bacon for breakfast.

So, our conversations are basically one-sided. If someone else is around, I try to have a conversation with the other person, in the presence of my mom, so she can hear what is said.

I thought my Mom knew what was going on around her, but I couldn't really be sure.

However, a couple of days ago I was searching for the "wipes" (or personal care pre-moistened sheets, or whatever they are officially called). They weren't in their usual place, so I was looking all around the bedroom.

Apparently my mother does paying attention to what goes on, because I heard her ask me "What are you looking for?". At first I wasn't surprised by this, but then, I realized this is her first complete sentence in a long time, and was quite taken aback.

I try to remember to talk to her, but sometimes I don't have much to say.

That's why it's really nice to get out in the world. Then I can tell her where I have been, who I saw, what I did, etc.

It's good for me too.

That gettin' out in the world.

I kinda miss it.

But, I am sure my Mom misses it more.

Getting old sucks.

Oh, that explains it!

I phoned the sibling (unnamed to protect the guilty) who holds the POA regarding the comment made by the social worker about me taking time off this summer.

It was my sibling who made the comment to the hospice nurse. The same sibling who thinks Mom will die by August.

Anyway, she confessed that she had made the inquiry because, as she confirmed, she cannot take care of Mom.

In her defense, she did take care of her for a month earlier this year. So, she does know how much work it is, and has decided she can't do it.

Funny I don't get more gratitude from her. Even if she won't take care of our mom, one would think she would be at least sending me a thank you card or something once in a while.

Oh well. I think it's kind of funny..... and sad.

I am no longer even angry about her lack of help.

Or, maybe I am just numb.

Unprofessional Social Worker

This morning about 8:00 AM the phone rang.

If it wasn't for the fact I am taking care of mom, and realize the call is most likely for her, I would not have got out of bed to answer the phone.

It was the social worker from the hospice agency.

She said she was planning to visit me today to talk about respite care. That the nurse had mentioned I planned to take some time off this summer.

Well, this was all news to me. I am not really sure why the nurse thought this. I am a bit concerned she thinks I need time off....

I told the social worker "no, I don't have any plans, but....if you want to tell me what's available I would certainly listen".

She replied that only if I knew for sure I was taking time off that she could then put some things together for me. To be honest I am not sure she will come up with much more than I have on my own in the past, but I would have given her a chance.

However, that was until she made this comment....in closing she said to me, "Have you found me a baby boy?"

I kind of chuckled, because I wasn't really sure what she meant by this. Then she repeated it to me, as if I hadn't heard what she said.

I think I said "what do you mean", and she said something like "did you find me a boy?".

I can only assume she was asking me if I had found her a boyfriend.

I found this totally inappropriate and unprofessional. I have met this woman only once, and spoke with her on the phone maybe 2 times.

I think I might say something to the hospice nurse when I see her, but I can't decide.

The guessing game

When will mom die?

That is the question which my siblings (and I) continue to ask.

So much so, that the one which holds the Power of Attorneys (not me) asked the hospice nurse to meet to discuss.

I don't know the full outcome of the conversation, but I suspect it was something like "who knows?".

I think the best advice I received on this matter was "you cannot plan for when they will die, you can only plan for when they die".

The funeral is planed and paid for, so that's the best we can do at this point.

Well, I guess we could quit giving her drugs, or feeding her (as someone suggested), but I could not imagine doing so unless she was really in pain or totally out of it. Furthermore, I think that might fall under the category of elder abuse.

Elder abuse is doing something or failing to do something that results in harm to an elderly person or puts a helpless older person at risk of harm. This includes

• Physical, sexual and emotional abuse
• Neglecting or deserting an older person you are responsible for
• Taking or misusing an elderly person's money or property